Thank you so much for this video. It’s one of the better ones out there. I like that you didn’t include long explanations but the visual showed the tremendous difference. As a fellow Parkinson’s sufferer I can imagine how hard that must have been to turn yourself off. Anyway I’m definitely getting the DBS Surgery. I just passed the Off On test and am on to the next test. Thanks for sharing.
I am using my husbands account here, but It is amazing to see what good DBS does! I was diagnosed at 32 with yopd. Six years in, I am now being evaluated on if I am a good candidate. I just did my psych test today. Your video amazed me
Thanks so much jasmine for posting this. Congratulations hope you are still doing well I'm on the waiting list for dbs but covif delayed it and then the surgeon stopped doing public surgery
Hello Jasmine, I too am a DBS recipient. The first implant was installed 04/2013 and the second 09/2014. The difference for me is that I'm still very much able to function for myself, where as with the medication alone I had function on an incremental basis. I was dosing with Sinemet 25/100 fourteen to seventeen times a day, from morning until bedtime, about ten o'clock. Infrequent dyskinesia had set in and I never knew when or where I would be when they struck. Since DBS, I now dose four times a day which includes a single Sinemet CR 50/200 and a Neupro 2 mg patch. My original dx was in 2010, at age 50 however I had symptoms two years (since age 48) prior that I didn't seek medical treatment for. There are a lot of us DBS'ers out in the world now and I would encourage every person who deals with Parkinson's and is young enough at heart to still enjoy family and friends to have the surgery. This surgery is being performed more frequently (since 1995 I think) across the United States, especially at university hospitals where neurology is prevalent. The only suggestion I have for people is too associate themselves with a university hospital (teaching hospital) of their choice and seek the surgery there. Going to a local neuro (which was where I started) who is not on the cutting-edge of Parkinson's disease will not produce the results the person needs to maintain themselves and be vital to the family. Any bad experiences of this surgery, are by far overshadowed by the good experiences, especially if people will only look for their university hospital of choice. Mine is Wake Forest Baptist Medical Center in Winston-Salem, NC. I movement specialists team is wonderful and I really don't know where I'd be or what condition I'd be in if I didn't have them.
This was absolutely amazing for you to share.. I have been having symptoms of Juvenile Onset Parkinson's Disease since the age of 2.. And just a few months ago I was diagnosed by my neurologist. I'm currently 14 years old and I've been on at least 20 different trial meds trying to cope with the symptoms, so far not a single one has worked, a few even worsened them. My doctor has noted signs of my rigidity and tremors, and although JOPD is a very individual disease, it's I guess kind of in a way nice to see where I'll end up. God bless you.
Lillie Huffman hi! Sorry for the news its PD but know you have a big PD community and there is hope. DBS changed my life so drastically. I hope you can find some relief!
God bless you Jasmine. You are a fighter and inspirational. I'm looking into DBS as well. I only take 4 senimet a day and I find it hard with the side effects. Can't even imagine what 14 would feel like. Wish you the best.
Hello Jasmine, I'm very happy to see DBS working for you. I am currently 22 years old and was diagnosed about two years back, currently thinking of whether to pursue DBS or not. If possible could you guide me a bit about the improvements and side effects you are experiencing post DBS. I would be really grateful if you could help me out here. Waiting for a positive response :-)
the difference for me between DBS and not is being bedridden and being functional. I still have a lot of problems with DBS. But i was definitely close to dying before DBS. My symptoms were out of control and my meds were making me so sick. They were screwing my blood pressure up so bad. I still take a bunch of medicine (6 sinemet, 2 tramadol, 1 Klonopin, and stomach meds for my gastroparesis). but before I was on 8 sinemet, comtan, azilect, and amantadine and i had dyskinesia. all thats gone now
Thanks for sharing. I have one question. Were you before very upset or angry before knowing you got Parkinson because my husband always get nervous for the minimum of thins and now he is diagnosed with Parkinson
Im 14 years old and recently, while i was studying, my hands started to shake non stop. I also noticed my handwritting starting to change alot ( much smaller hand writing ). Sometimes, when i stand up, i lose balance and fall. I also always get headaches evrerytime. Until now, my hands are still continueing to shake. However, i still don't know if i should go see the doctor right away. I know it's really rare to have juvenile parkinsonism. Please help me, what should i do now???
hi Linh! I would be happy to talk to you more if you would like, feel free to message me on facebook, my name should show up. what you describe is fairly characteristic of PD, but also of some other neuro things. its definitely worth going to see a doc about! best of luck!
Hi Jasmine, I'm very happy your life has been restored to normal. I wanted to ask a question, if I may. Before you did DBS, have you tried anti-parkinson's medications, such as dopamine agonists, levodopa etc. I've been told that with them the symptoms can be managed quiet well.
Ardian Gola Yes that is a requirement for DBS. You cant get DBS without having tried everything. Symptoms can be managed with Ldopa and other drugs for a while. Some people go ten years with a good response. I lasted two years and I was dealing with debilitating dyskinesias as a result of my meds. I still take meds and without them my body doesnt work even with dbs. The combo of meds and DBS are what is relieving my symptoms.
@@jasminesturr6127 Hope you are doing fine. I was wondering if you could share with us your health condition today as far as DBS is concerned? Are you experiencing any unbearable side effect of it? Would you still recommend DBS to Parksinon's patients? What about neurostimulator (or battery pack), which is implanted under the skin? Is it discomfort and can it be seen from the outside?
Thank you so much for this video. It’s one of the better ones out there. I like that you didn’t include long explanations but the visual showed the tremendous difference. As a fellow Parkinson’s sufferer I can imagine how hard that must have been to turn yourself off. Anyway I’m definitely getting the DBS Surgery. I just passed the Off On test and am on to the next test. Thanks for sharing.
I am using my husbands account here, but It is amazing to see what good DBS does! I was diagnosed at 32 with yopd. Six years in, I am now being evaluated on if I am a good candidate. I just did my psych test today. Your video amazed me
That's amazing. I've been looking at DBS info for a while. It's incredible to see this technology at work. I'm happy that this has helped you so much.
Amazing, It's miracle, hope in near future I can also will share the same video. Good Luck Jasmine
wow ,thanks for sharing ,im 45 now and am know going ahead with the DBS.
take care be strong and keep fighting mark
I am patient of yopd , good on medicine since two years
Your video is very promising and hopeful to see myself in near future
Thanks for sharing ❤
Thanks so much jasmine for posting this.
Congratulations hope you are still doing well
I'm on the waiting list for dbs but covif delayed it and then the surgeon stopped doing public surgery
I used to have that same GJ tube...I hated it! Thanks for showing us live with DBS and Juvenile Parkinson’s
Hello Jasmine,
I too am a DBS recipient. The first implant was installed 04/2013 and the second 09/2014. The difference for me is that I'm still very much able to function for myself, where as with the medication alone I had function on an incremental basis. I was dosing with Sinemet 25/100 fourteen to seventeen times a day, from morning until bedtime, about ten o'clock. Infrequent dyskinesia had set in and I never knew when or where I would be when they struck.
Since DBS, I now dose four times a day which includes a single Sinemet CR 50/200 and a Neupro 2 mg patch. My original dx was in 2010, at age 50 however I had symptoms two years (since age 48) prior that I didn't seek medical treatment for.
There are a lot of us DBS'ers out in the world now and I would encourage every person who deals with Parkinson's and is young enough at heart to still enjoy family and friends to have the surgery.
This surgery is being performed more frequently (since 1995 I think) across the United States, especially at university hospitals where neurology is prevalent. The only suggestion I have for people is too associate themselves with a university hospital (teaching hospital) of their choice and seek the surgery there. Going to a local neuro (which was where I started) who is not on the cutting-edge of Parkinson's disease will not produce the results the person needs to maintain themselves and be vital to the family. Any bad experiences of this surgery, are by far overshadowed by the good experiences, especially if people will only look for their university hospital of choice. Mine is Wake Forest Baptist Medical Center in Winston-Salem, NC.
I movement specialists team is wonderful and I really don't know where I'd be or what condition I'd be in if I didn't have them.
Thanks for this video.
This was absolutely amazing for you to share.. I have been having symptoms of Juvenile Onset Parkinson's Disease since the age of 2.. And just a few months ago I was diagnosed by my neurologist. I'm currently 14 years old and I've been on at least 20 different trial meds trying to cope with the symptoms, so far not a single one has worked, a few even worsened them. My doctor has noted signs of my rigidity and tremors, and although JOPD is a very individual disease, it's I guess kind of in a way nice to see where I'll end up. God bless you.
Lillie Huffman hi! Sorry for the news its PD but know you have a big PD community and there is hope. DBS changed my life so drastically. I hope you can find some relief!
omg, you have like a remote controled parkinson on off. i love science
God bless you Jasmine. You are a fighter and inspirational. I'm looking into DBS as well. I only take 4 senimet a day and I find it hard with the side effects. Can't even imagine what 14 would feel like. Wish you the best.
Dimitra Kapetanakis thank you. Its been two years and dbs is still amazing! Wishing you the best
Thank you for sharing this! I really hope it will work this good on me.
Wow! Bloody amazing!
I'm so happy for you , 👍🏻👍🏻👍🏻👍🏻👍🏻👍🏻
Hello Jasmine, I'm very happy to see DBS working for you. I am currently 22 years old and was diagnosed about two years back, currently thinking of whether to pursue DBS or not. If possible could you guide me a bit about the improvements and side effects you are experiencing post DBS. I would be really grateful if you could help me out here. Waiting for a positive response :-)
hello! if you are on facebook, find me. i am 21, dx at 18, symptoms since 14. I would be happy to talk to you!
the difference for me between DBS and not is being bedridden and being functional. I still have a lot of problems with DBS. But i was definitely close to dying before DBS. My symptoms were out of control and my meds were making me so sick. They were screwing my blood pressure up so bad. I still take a bunch of medicine (6 sinemet, 2 tramadol, 1 Klonopin, and stomach meds for my gastroparesis). but before I was on 8 sinemet, comtan, azilect, and amantadine and i had dyskinesia. all thats gone now
Thanks for sharing. I have one question. Were you before very upset or angry before knowing you got Parkinson because my husband always get nervous for the minimum of thins and now he is diagnosed with Parkinson
Im 14 years old and recently, while i was studying, my hands started to shake non stop. I also noticed my handwritting starting to change alot ( much smaller hand writing ). Sometimes, when i stand up, i lose balance and fall. I also always get headaches evrerytime. Until now, my hands are still continueing to shake. However, i still don't know if i should go see the doctor right away. I know it's really rare to have juvenile parkinsonism. Please help me, what should i do now???
hi Linh!
I would be happy to talk to you more if you would like, feel free to message me on facebook, my name should show up.
what you describe is fairly characteristic of PD, but also of some other neuro things. its definitely worth going to see a doc about!
best of luck!
thank you for sharing. i also have yopd, and appreciate the vid.
Wow, that is miraculous
Jasmine , can i ask you ...how much dollars the device cost .
*Thank God for science! :)*
*people
Can i have information wear did you get dbs
hello! i had DBS at Kaiser Sunset here in Los Angeles, by Dr. Ajay Ananda
Hi Jasmine, I'm very happy your life has been restored to normal. I wanted to ask a question, if I may. Before you did DBS, have you tried anti-parkinson's medications, such as dopamine agonists, levodopa etc. I've been told that with them the symptoms can be managed quiet well.
Ardian Gola Yes that is a requirement for DBS. You cant get DBS without having tried everything.
Symptoms can be managed with Ldopa and other drugs for a while. Some people go ten years with a good response. I lasted two years and I was dealing with debilitating dyskinesias as a result of my meds. I still take meds and without them my body doesnt work even with dbs. The combo of meds and DBS are what is relieving my symptoms.
@@jasminesturr6127 ..
@@jasminesturr6127 Hope you are doing fine. I was wondering if you could share with us your health condition today as far as DBS is concerned? Are you experiencing any unbearable side effect of it? Would you still recommend DBS to Parksinon's patients? What about neurostimulator (or battery pack), which is implanted under the skin? Is it discomfort and can it be seen from the outside?
i hope i can afford that :(
God bless you
The difference!
gob bless you
please can we chat... I have juvenile Parkinson disease too...
A miracle... :)
you may also want to credit the specialist who basically saved her life.
Don’t care